Near death leads to a life of MRSA advocacy
'It's been a secret and silent killer for decades.'
In 2003, Jeanine Thomas of Hinesdale, IL, founded the MRSA Survivors Network, the organization which successfully lobbied to have Oct. 2 declared World MRSA Day and October World MRSA Month. A tireless activist for MRSA awareness, Thomas recently sat down with Hospital Infection Control & Prevention for the following interview.
Q. Please tell us a little about your MRSA infection, the event that started all of this.
A. "I was infected with MRSA in November of 2000 during ankle surgery. I had slipped on ice and broke my ankle, so I was having hardware put in. I had to have it done or it would have never healed, so this was not elective surgery. My skin was never broken when I came in. It was covered and nobody touched it, so [infection] could have only happened during surgery. I came home for two days and I had terrible pain. I went back to the ER and they saw that it was hugely swollen. The incisions were black. It was hideous looking I can't believe it was attached to me. And then the pain and the nausea. It went into my bone marrow and I acquired osteomyelitis. Later it went into my bloodstream, causing sepsis. I went into multiple organ failure and septic shock in the middle of night. I nearly died. I was critically ill. They were able to save me, but I had multiple surgeries in fact, seven more to save my leg from amputation. I was out of the hospital, but by then I had contracted C. difficile."
Q. What was your life like before this traumatic event?
A. "I was just a normal person having a normal life, you know. 'A' level tennis player. I had my own consulting business. But then I spent six months in bed trying to get my leg to heal. Because of the infection I needed a bone graft, a skin graft and a muscle graft. I could not have that so it never healed properly. The infection destroyed the cartilage and there was a lot of damage. I got secondary infections for four years. I spent 17 months in bed two to four months at a time very, very sick. I lost my consulting business. It was financially devastating. If you have never been sick you've never had an injury or illness it is very difficult to deal with."
Q. Has your health been restored?
A. "No. I have a seriously compromised immune system. It's very fragile. I can easily get any type of infection, including viral. There is damage to my central nervous system. I have never been back to the health that I was before."
Q. Did you pursue litigation against the hospital?
A. "Well, there is no point in saying what hospital because it is in every hospital. This is a microbe. You can't prove it. It's an inherent risk of surgery and you sign [informed consent]. But I had no idea. I never thought that this was something that would happen to me because I was healthy."
Q. What motivated you to become a MRSA patient advocate?
A. "There was nothing on the Internet there was no support group for me. There was for every other disease, but not for MRSA. Because of a series [on health care infections] in the Chicago Tribune then state Sen. Barack Obama introduced in 2003 the Health Care Report Card Act to report infection rates. I got involved with that and wrote to state legislators and the governor to get it passed. Then I was appointed to be the consumer representative on that state board. Illinois has really been a leader in this whole movement. [The MRSA Survivors Network] declared the first World MRSA Day on Oct. 2 in January of 2009 and world MRSA month in October. Oct. 2, 1961 was the first time that microbiologist Patricia Jevons in London saw MRSA under the microscope. It is historic. Senate resolution 301 declaring World MRSA day Oct. 2 and World MRSA Month in October passed in the Senate. We are official."
Q. A lot of legislation is being discussed regarding MRSA and hospital infections in general, but you say your main goal is raising awareness and patient education.
A. "What we need is the World Health Organization, the United Nations, and the Centers for Disease Control and Prevention to wake up. The MRSA epidemic is a call to action. It is spreading rapidly to other countries. We need prevention initiatives such as screening for MRSA in at-risk patients. We need to bring awareness campaigns to the public. So many people do not know how MRSA is transmitted and how to protect themselves. It's just like AIDS was 25 years ago. People do not even know what MRSA is there should be public service announcements. There should be appropriated funds from Congress as they did for H1N1 and avian flu spent on awareness to the public and the health care industry. This is my goal. We need to put this disease up with all of the others. Let's get it out of the closet. It's been a secret and silent killer for decades. It's an ongoing epidemic. More Americans are dying every year from MRSA invasive infections than HIV/AIDS. It's shocking that CDC is not going to Congress and informing them that we have an ongoing epidemic. That has been my crusade. The CDC needs to take the leadership. They have abdicated their leadership with this disease."
Q. You mentioned using active screening cultures (ASC) to detect MRSA patients, which is usually done to put them in isolation precautions to protect other patients from transmission. Some have reported great success with this approach. However, the measure is controversial because other clinicians argue that it has negative patient impact due to prolonged isolation and other factors. They say focusing on hand hygiene and standard infection control precautions can bring MRSA under control.
A. "There is no controversy because there are over 200 studies and 500 abstracts that show that it works. ASC is not controversial. Entire countries have been doing it some for decades. Countries like Holland have less than 1% MRSA prevalence. The controversy is that the CDC has not done anything. It's unclear to me why they have not put this in the first tier of the CDC Healthcare Infection Control Practices Advisory Committee (HICPAC) guidelines. There are 87 other options and it has confused infection preventionists. They don't know what to do."
Q. Well, as I recall they have ASC as a second tier option if you are having a problem with ongoing MRSA transmission.
A. Yes, but you don't know if you have a problem unless you look for it. It's endemic in all hospitals. It's there just waiting to infect people. They are also coming in the door now colonized with community-acquired MRSA. They are spreading that strain into the health care facility. [Without screening] you're doing nothing to control what's coming in and what's going on inside. It's very simple. The CDC has turned their back on this disease. They have abdicated their responsibility. It has gone on so long for decades when other countries in Scandinavia have controlled this. We have done nothing, though Dr. [Barry] Farr was on this decades ago. He started screening in 1980 at the University of Virginia and controlled it. Why have we not controlled this disease and now it's proliferating and is in the community? It's in our farm animals, our pets, our food supply. This could have all been prevented."
Q. The CDC must weigh political realities and resource considerations. Why do you think they haven't been more aggressive with MRSA?
A. "That's for my book. I do believe I know why. You look at the Reagan administration they suppressed AIDS research and public [awareness] until it got into the blood supply and women and children were getting it. They did nothing. There are parallels on what happened with AIDS and MRSA. You can see the politics. Unfortunately, hundreds of thousands of people have died. People were carted off to the morgue, especially the elderly. 'Oh they were going to die anyway. It's just a complication,'" [they say].
Q. Indeed, for years the prevailing dogma in infection control was that a certain level of infections was the inevitable price of keeping very sick patients alive. That's certainly changing with the zero tolerance for infections movement. What about infection preventionists? Are they part of the problem or the solution?
A. "I go to the APIC (Association for Professionals in Infection Control and Epidemiology) meetings they have not been leaders themselves. If the CDC is not going to be a leader then APIC, SHEA and IDSA should step up. This is an ethics issue. People are dying. But I recently talked to many of the newer APIC members in New Orleans [at the APIC meeting]. They are mostly women many have masters of science degrees. They have a whole new way of thinking. They know about this and they are on it. The old way of thinking is well, we can't do anything about [these infections]. It has been a silo mentality. They were in their silo and they did not know what was going on. It was not a reportable disease. Now MRSA is a reportable disease in 26 states. So many people have been touched by this disease just about everybody knows somebody who has had a staph infection and they know how it has affected people's lives. They are telling their stories and now the younger infection preventionists know what is going on."
In 2003, Jeanine Thomas of Hinesdale, IL, founded the MRSA Survivors Network, the organization which successfully lobbied to have Oct. 2 declared World MRSA Day and October World MRSA Month. A tireless activist for MRSA awareness, Thomas recently sat down with Hospital Infection Control & Prevention for the following interview.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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